Watch Brooke's full interview here:
Hi Brooke, tell us a bit about yourself.
Hi, my name is Brooke. I was diagnosed with stage one breast cancer last year. Fortunately, I am cancer-free now, and I was treated at RWJ St. Barnabas in New Jersey.
So I'm a mom, a wife, I have two children, and I enjoy yoga - I do that all the time, It's really been a great part of my life. And I'm also a big New York Knicks fan. As far as my occupation, I work in a pharmaceutical company where I am the marketing operations in that role. As far as my diagnosis, I was diagnosed in 2022 with breast cancer, stage one. Unfortunately, it turned out that it was one that would need chemo. And so at that point, that's when I started to learn about some options for scalp cooling.
How did you find out about scalp cooling?
Coincidentally, my sister-in-law is an oncology nurse. So at the point when I was diagnosed with breast cancer and found out I would need chemo with it, she let me know about the scalp cooling. And she said that many of her patients actually couldn't use it because there was no insurance coverage in her facility. So she was already telling me about looking into financial assistance and said that she wasn't aware of how much it was, but she knew it cost a lot. So interested at that point, I asked my oncologist more about it and that's when she said that some of the patients were using it, and that she would get me in touch with the nurse to see if I would have coverage.
How was your experience of the reimbursement process at your center?
The process was, the nurse sent me the enrolment form, then I completed it and sent it back to her. She submitted it to my health insurance, and they responded back saying that I was covered. So for me, I was like, oh great, I’ll go forward with this. But it was interesting to find out after the fact, as I follow the Paxman Facebook page that a lot of people on there were trying to figure out how they can get the cap, and talking about monthly payments and the cost of it all. So I didn’t realize how lucky I was until all this process began and I started wearing the cold cap.
If reimbursement had not been available, would you have paid out-of-pocket for scalp cooling?
I had it covered 100% because I later learned that it would cost over $2,000. So for me, it would have to be covered because I didn't want to take the chance of something that I knew was not 100% guaranteed to hold all of my hair. It wouldn't have been worth it in that case for me to spend over $2,000 when I can use it towards my kids' savings. So once I did find out that I would be covered 100%, which I was very thrilled about, at that point I decided let's just go ahead and try it.
My motivation was I really wanted to just continue to look normal, and not like a cancer patient with no hair. I wanted to be able to, you know, just look normal around the kids. I did give my daughter who's nine just a heads up saying, I might lose my hair during this treatment time, and at that point, she actually said I would look pretty either way - which I thought was really sweet. But I figured since I had it covered let's give it a try. I knew it would be a commitment, and something I had to stick with as my treatments were 12 weeks - so I had to make sure to wear the cap every week and make sure I was taking care of my hair during that time.
Would you have chosen an alternative healthcare facility if scalp cooling hadn’t been covered where you were treated?
I would not have switched providers based on if there was reimbursement for the cooling cap in one location versus the other as far as facilities. For me, what was most important was finding the highly recommended oncologist, the highly-rated facility first. And if they didn't have the reimbursement coverage for the cap, I would have had to just go without hair. But at that point, my choice still would have had to have been the doctor over the treatment of the cap.
How was your hair retention with scalp cooling?
So as far as my hair retention, I would say that I kept about 90% of it. The areas where I lost hair were right above my ears, and I understand that's where the cap doesn't really touch in those locations. So right above my ears, it was almost bald, but the majority of my hair stayed. I've noticed if I just kind of put my fingers through my hair a little bit, I could feel my scalp more. But physically, as far as appearance, I kept the majority of my hair. So nobody would have known what was going on as far as my treatments and the cancer experience without me actually saying anything about it - I was really happy about that I did.
I worked through treatment, and I just took off the days when I had my treatment. I would have liked to have worked through those days, but my husband said, you know, you're doing too much. So on those days I took off.
So another reason why I went forward with using Paxman was just looking at the videos and going on the website, and seeing that even though the studies were focused mainly on those that were not black women, I saw the videos for women that have my hair, for black women too. And that made me realize, okay, this possibly could work for my hair as well. And I understood based on the studies that they didn't have enough black women to participate, which is probably why the numbers were so low. But just to see that they were also thinking about us, and they saw us, made me feel like, okay, I'm going to put the effort into this and give it a try.
Did scalp cooling have a positive impact on your experience of treatment?
I would say that this is not just a physical and vanity situation. This is emotional for cancer patients to be able to look normal. I mean, looking normal helps you to feel normal in a way. And it's a shame. It shouldn't be a choice based on whether you can afford it or not. It should be available to anyone who fits the profile to be able to use the cooling cap - and it's just unfortunate that it's not covered for all. Again, I didn't realize how lucky I was until almost after the fact that I had 100% coverage. But it shouldn't come down to finances. It should be available to all that have the opportunity to experience it.
For more information on Paxman's Buy & Bill model and how to implement it within your institution, please click here.